Life with severe autism

We’re quite lucky in that Archie was relatively easy to toilet train. My Mum made it her goal when he was 4 or 5. Joseph was about 2 at the time and I was pregnant with Louis so I was happy to hand that job over. It took quite a long time – we had to try and keep him on the toilet until something happened so it was a bit hit and miss but we got there in the end.

We were fortunate that Archie had enough control over his muscles and enough understanding that toilet training was achievable, but it fairly often isn’t for children with severe autism or learning disabilities. In this case the PCT should provide incontinence products. Many PCT’s have imposed arbitrary limits on the number of nappies allowed each day leaving families short . You generally can’t just pop down to your local supermarket for larger nappies and they’re very expensive.

This problem was brought to David Cameron’s attention by during a pre-election chat on Mumsnet where he promised to look into the issue. Meanwhile Mumsnet joined forces with Every Disabled Child Matters to launch a campaign calling for an abolition to ceiling limits on nappies set by PCT’s.

Mid August there was some success. The Secretary of State for Health wrote to the Chief Executive of the NHS asking him to tell PCT’s that: ‘Pads (nappies) should be provided in quantities appropriate to the individual’s continence needs. Arbitrary ceilings are inappropriate’.

Further details can be found on the Every Disabled Child Matters website.

I heard from a friend earlier this week that our PCT are still setting limits so I emailed the continence service yesterday asking them to confirm that they are aware of this guidance. I will post the response here when it’s received.

I’m still not entirely sure how we’re going to train him. Now he’s been born we need to start researching this. I spoke to the breeder tonight and in between playing the puppies a CD of fireworks, babies crying and hoovers she is going to play a CD of Archie shouting and screaming. She’s very dedicated- it will be quite an unpleasant CD. Of course the idea is to desensitise the pups.

After that I’m not sure. Basic training and socialisation to start of course. Followed perhaps by more specific retrieval training. A friend told me today about PAWS (Parent Autism WorkshopsAnd Support) run by Dogs for the Disabled where though a series of three workshops they teach you to get the most out of your family pet. To attend your child needs an autism diagnosis. I contacted them this morning and received a very quick reply with further information. I’ve decided to attend the training in Cornwall sometime in the Spring. Venue and dates to be confirmed. There are already confirmed dates and venues for workshops in Liverpool, Kenilworth, Wytham (near Oxford), Uxbridge and Evesham.

I’ve created a new category for the blog – Dog training- where I’ll try to provide regular information about our attempts to train Chewie. I don’t claim any expertise in this area. If you have any please get in contact!

About a year ago I registered for the Springwise weekly newsletter. It’s the one email newsletter that I read religiously. Cup of coffee in one hand, computer mouse in the other – it’s a moment of peace and quiet.

I was overjoyed in last week’s newsletter to see that someone has finally opened a mobile shoe shop. I have been suggesting this for years. If you’re in or near Berkhamsted (I’m not unfortunately) you’re in luck.

Shoe shopping was always hideous for us when Archie was younger. He would kick the staff when they tried to touch his feet and curl his toes in the measure making it impossible to find his size. We also had the issue of waiting. He’s actually fine now – the last set of shoes were fitted on a busy day and the only problem I had was preventing him from marching straight out of the shop when the fitter suggested he had a walk around.

Haircuts were similarly hideous when Archie was little and that problem was solved by school. They have a hairdresser visit every six weeks. We send him in with his £5 and he arrives home shorn. For many years I hoped they would make a similar arrangement with a shoe shop – alas no – but if you’re in anywhere near Hippity Hop Shoes your life might just have become easier.

One of my favourite poems over the years has been by Shigeji Tsuboi ‘I may be silent, but I’m thinking. I may not talk, but don’t mistake me for a wall’. I titled my first You Tube video, Silent but.

I’ve always assumed that Archie will never speak. I’ve said it often enough on here. I do buy into the Growing Minds idea of ‘you may think you know what the future holds but actually you don’t‘ enough to say that I think it’s ‘unlikely’ Archie will ever speak, but really I stopped believing he would talk several years ago.

Until Archie was 8 speech was pretty much impossible for him. He couldn’t imitate, and if you can’t imitate you don’t speak. Then imitation kicked in and I wondered whether speech would follow. It did a little bit. After a couple of years we heard his first clear word ‘Mummy’ (which was nice). And it’s a word he uses a lot. ‘Mummy. Mummy Mummy. Mummy’. He can be very repetitive with it when anxious and I often find a note in the home-school book ‘lots of Mummy’s today’ or am told the same when I pick him up from respite.

Other words haven’t really followed. At Camp Bestival last year :shiver- we’re still recovering: we had a desperate attempt at a new word. We’d decided just to eat at the festival (£££’s) as the thought of cooking and dealing with the three children and a tent was all too much. Luckily Archie had recently stopped his gluten free diet without any side effects so there was a pretty wide choice. We’d found he liked pies and when he asked for dinner one night I took him with me to join the pie queue. Lots of shouting followed. Blank look from me. I had no idea what he wanted. With great effort he twisted his mouth and managed to choke out ‘chi n’ chi’. FISH AND CHIPS. I was stunned, and very proud – he could have as many chi n chi’s as he wanted. I have no idea when he’d even had fish and chips. He’d been gluten free for the previous 8 years.

After this event there were a few changes. No new words as such (‘tu’ for ‘shut’) but lots of new sounds. When Archie regressed he lost his animal sounds, but sssss (snake) and qua qua (duck) reappeared. But still I didn’t really think speech was possible for him.

Then, last week I came across four really inspiring You Tube videos – they show a 12 year old boy with severe autism learning to talk, starting with 3 sounds. They’ve used a variety of techniques; Kaufman cards, PROMPT, and Beckman Oral Motor In a year he’s gone from three sounds to a number of really clear words – and he looks so proud of himself. Really moving and inspiring videos.

The first is here, taken shortly after the therapy started:

There are two others and then the latest here:

Although on You Tube I feel these videos are very personal so I will check that Dan’s Mum doesn’t mind them being on here.

Anyway I watched them and almost cried. This was the first time I had ever seen anyone remotely like Archie learning to talk. Even if Archie only learned to say 20 words it would change his life completely. Currently he is sociable. He loves to vocalise rather than use PECS but can only really do this with me (anyone else struggles to understand the difference between ‘nanee’ with finger pointed at palm (respite), ‘nanee’ with finger pointed at front door (granny), ‘nanee’ with finger pointed out of window ‘Matthew’ and ‘nanee’ by itself (kitchen)). So he’s limited to conversations with me around the few words I can understand. Sometime this summer I picked him up from respite and one of the workers commented that she loved watching us talk because I understood him and we had a real back and forth conversation. She called someone else over to watch us.

Archie’s respite centre is really excellent, they often think about ways to extend him and completely co-incidentally a couple of days after watching the videos of Dan the manager said to me that she felt someone really needed to help Archie speak. I’m paraphrasing but she said it was unusual to have a child who had so much to say but no way of saying it. This has been my feeling about him for the last 10 years and really what drove my interest in going into autism research. I feel that he (and others I know like him) have a wish to communicate but no tools to do this.

The time and effort it would take to give him a few words means that no publically funded speech and language therapist will ever be able to work with Archie or those like him. For those in the south-east Sharnay Mail seems to be the person you need. We’re nowhere near her. This summer I have had some brilliant helpers (funded by direct payments) working with me – two SALT students who have just finished their second year. They watched the videos as well and have pointed out things I’d completely missed about positions of the palate and nasal sounds and other things I didn’t fully understand. Archie won’t really engage in therapy these days, but he is happy to try out sounds in return for something he’s requested and between us we managed to get ‘jer’ for ‘juice’ and ‘pi’ for ‘piggy back’ but it’s clear that if we were going to get anywhere with Archie’s speech we need proper professional help and advice. Then in one of those things that happen, where for a change everything seems to come together, a SALT who has been providing bank care at Archie’s respite centre this summer approached me today and said she is very keen to work with him (providing the school SALT is happy) and so fingers crossed, we’ve found our person.

She’s not just going to focus on speech – Archie uses whatever is around to communicate. My favourite was when he found a You Tube video (he needed to follow a sequence to get to the one he wanted) – this particular video is called something like ‘from Bristol to Cornwall and back again’ – it features a petrol station somewhere near us. Archie found the petrol station, paused it then fetched Richard, pointed at the petrol station, then out the door. It happens to be over the Tamar Bridge which is his favourite place in the world. Well given that much effort to communicate Richard had him in the car within 5 minutes and they drove to the petrol station to buy jelly babies. This was repeated so many times over the following weeks the bank stopped Richard’s debit card on account of ‘some unusual transactions at a local petrol station’. Anyway given this wish to communicate we plan to work on his AAC as well. iPad here we come…… Or maybe even, some words.

This week I am doing something I thought would never happen again – I am waiting for a new addition to our family to be born. No more children – I have my hands well and truly full with three, but instead we’re waiting for the birth of our golden retriever puppy.

In July I travelled to Germany to give a talk on severe autism and humour. Feel free to contact me if you want to know more. My talk was followed by a paper on autism therapy dogs which included video. These short clips interested me greatly as it showed a different use of therapy dogs than is usual in the UK.

I have written briefly about autism and dogs before and also reviewed a book about a boy and his dog. I was never entirely sure that this was all that relevant for Archie. He’s also now too old to receive a therapy dog from either Dogs for the Disabled or Support Dogs. I did write and ask why they had an age limit and they replied that it was because older children were less flexible. This led to my eyebrows raising a little because with increasing understanding Archie has become more flexible and we can actually reason with him a little now. I then heard that the age limit was applied because the dogs and children were attached (physically) to each other and an older child attempting to run could be too strong for the dog to block. This makes more sense.

Anyhow the video I saw in Germany showed a different type of therapy. Here the dog was being used as a playmate but in way that was structured by dog trainer. Mainly the dog needed to retrieve on command. The video showed children engaged with the dog and interacting in a way they hadn’t really before. It was fairly special and looked more accessible to us. I mentioned in a previous blog post that Archie had been very interested in my friend’s guide dog and had actually interacted with him in this sort of way. This experience coupled with chatting to the presenter of the talk led to our search for a golden retriever.

Last year I started a new business to fit around the autism research I am currently completing – something completely different – I run a pet sitting business. As a result I have learned a lot in the last year about dog training (am very tempted to train properly if I can’t get funding to continue in autism research) – and am hoping to start applying that practically to our puppy. ABA has been a good background! I’ve been reading up on autism dog training – North Star in the States are the real experts and I’ve found other people taking on training themselves. We won’t be going down the service dog training route – I’m thinking more of a therapy type of playmate. We’ll start simply by teaching the dog to sit or fetch to voice or hand command – hand command being the Archie alternative of course (the breeder tried to demonstrate this to Archie but it just ended up with him sitting along with the dog!) I’ll probably look into Pets As Therapy as well when our dog gets a bit older.

We’ve been very lucky with finding a breeder – dog breeding can be a very murky world indeed, but we’ve found a lovely couple locally who occasionally breed their golden retrievers. They are working dogs so smaller than the show lines and their dogs have a lovely temperament with a few even having become service dogs for Woofability. They are happy to play the litter of puppies Archie’s sounds if we provide a CD so there will be a whole litter desensitised to sudden autistic type noises!

I’m checking their blog every day waiting for news of the birth – then the fun will really begin. 8 weeks to puppy proof our garden, work out training methods and finalise a name. Top of the list so far is Chewbacca (spot the house of Star Wars fans) – it has the advantage it can be shortened to Chewie for Archie. Any advice – or name suggestions- appreciated!

Finally, last weekend we made it to a Horse Boy Camp. I had been planning to volunteer at a Camp in Gloucestershire in March, but the dreadful rain we had at that time made the ground unsafe and it had to be cancelled so this camp really was long awaited. Horse Boy Camps are held at different sites throughout the UK during the year -we were booked into one at South Penquite Farm on Bodmin Moor, Cornwall. Incidentally South Penquite is a lovely campsite – worth visiting if you like small, basic but clean campsites that allow campfires. Accommodation varies from camp to camp but for this camp we were booked into a yurt. Tents were also available (cheaper) and some camps on other sites use cottages. The yurts are relatively escape proof, although our door didn’t lock from the inside. The days of Archie dashing off in the middle of the night are over (touch wood) so we felt relatively secure. The yurt did make everything easy – we only had to bring bedding and food, although setting fire to our dinner on Saturday night meant we also ended up exploring local take-aways.

Our yurt was situated in a small field separate from the rest of the campsite. There were 3 other yurts, all occupied by Horse Boy families. This was one of the best features of the camp. Archie obviously found his way into other people’s yurts and cars but it didn’t really matter – as we were just as likely to be visited by their children. We have camped previously (twice in campervans, once at a Feather Down Farm holiday and last year at Camp Bestival). On these other occasions we have had to act as a buffer between Archie and the neurotypical world, so we’ve had to constantly try to contain him. At Horse Boy, because we were surrounded by other families with autism, or by volunteers we were able to give him more free rein. We didn’t have to apologise constantly throughout the day and this in itself felt like a break.

We arrived on Friday morning and had our first horse ride after lunch when the kids all had a chance to ride bareback. Archie is happy to wear a hat, but it isn’t a problem if your child won’t. Not insisting on hats to ride is one of the ways in which Horse Boy is autism friendly. With people either side and carefully selected horses the chances of falling are low. At first Archie was a little freaked out by the lack of saddle – he’s not keen on fur/animal hair, but he soon relaxed and happily leaned on the people either side of him as he was led around the yard. Louis laughed his way around very noisily, whilst Joseph who had never been that keen on horse riding slowly blossomed in confidence. By the end of the ride he was leaning forwards to give the horse a big cuddle.

Later there was a wild food walk which Joseph and Louis took part in. I shared care of Archie with Richard so we did half the walk each. Joseph surprised us by enthusiastically trying every single item found – raw stinging nettles and gorse bush flowers no problem for this child who usually shudders when faced with a vegetable at home.

In the evening a camp fire was lit in the barn and the children were able to toast marshmallows. The majority of the families on the camp we attended had children at the severe end of the spectrum so socialising round the campfire in the barn didn’t really happen. Volunteers helped Joseph and Louis to toast marshmallows so they didn’t miss out. We were able to socialise round the campfire of one of our neighbours once the children were asleep – a bit of a first for our camping trips – the fire and the socialising. Red wine was shared and autism stories swapped.

Saturday started with gymkhana style games in a field – weaving in and out of tyres and various races. Archie wasn’t really aware of the races but loved trotting and his face beamed as he came back down the field. Two of the horses were saddled up in western saddles and one in a regular saddle. Small children were able to ride in the western saddles in pairs and Louis thought this was great fun.

After lunch on Saturday we took a ride out as a large group to a stream where the children could play. This was less successful as the children needed to take turns on the horses and some of our group (Archie included) couldn’t really manage that. This was taken on board and for the ride outs on Sunday smaller groups were organised. This meant that the children with autism could be the first to ride and they were also able to stay on the horse for longer. As soon as Archie’s ride was finished he wanted to return to the camp. This was fine- Richard took him back while I stayed with Joseph and Louis.

On Sunday nature art sessions were run. Using items lying around the children made displays and then talked about them. Joseph’s was titled ‘The Outer Circle of Life’ and he would have been happy to sell it for a billion pounds. Louis’ was on offer for a cheaper price- a few thousand – and was called ‘The Picture of Life’. The nature art session was a bit beyond Archie but this was recognised and he was able to join an extra ride out instead.

On Monday morning a further bareback riding session was held before the camp finished around lunchtime. Unfortunately I’d made a bit of a beginner’s mistake before leaving home. Archie has recently become really very obsessed with the CBeebies website. He likes watching the live video streaming, but he really really likes the sun which changes to the moon at 6pm. Before leaving for Horse Boy I had said to him ‘ah yes you’ll seen the CBeebies moon on Monday’. So from 5am Monday all he could think of was the CBeebies moon. Sometimes there are problems with progress- learning the days of the week brings extra rigidity in my experience. By 10.30am, the time the rides were scheduled to start Archie was pretty much beside himself, so we decided to finish on the high of the day before and come home. Next time I’ll remember to say ‘ah you’ll see CBeebies again on Tuesday’, and so give ourselves an extra day without panic.

It really was a great break for all the family. Rupert Isaacson in his book, The Horse Boy, which started all this writes about the difference between cure and healing. For us as a family the weekend really was rather healing. Joseph said it was ‘the best holiday ever’ and cried when we had to leave. Louis has asked to go again next year and it really did make a difference to Archie. He’s always enjoyed horse riding – he likes being up high, and he likes the movement – but he’s never paid the remotest bit of attention to the horse or donkey he’s riding before. This weekend he really bonded with a horse called Lucy. He stroked her (unheard of), prodded her (she was very good and didn’t react) and even said ‘neigh’ to her. And Richard and I had what felt like our first successful holiday. We crawled home after trying Camp Bestival last year, but this year we returned home tired but with a spring in our step.

I can’t tell you much about this film/documentary except that from the trailer it looks brilliant. It’s narrated by Kate Winslett and shows children with severe autism typing. Judging from chosen clips it shows all sorts of other more typical behaviours that go with severe autism as well. It’s changed its name since I first came across the trailer on YouTube; from ‘The Sunshine Boy” to “A Mother’s Courage: Talking Back to Autism”. I think I preferred the original. Hey ho.

It looks as if it will go straight to DVD (following in the footsteps of The Black Balloon which deserved a general cinema release in my opinion, but didn’t get one). You can register to pre-order a DVD here, although it’s not clear whether that will be for a US or UK version.